Thursday, November 21, 2013
I spoke with a live person who answered the phone right away. She listened to my issues. She apologized for the problems that my dad and my daughter had last weekend. I explained to her that we actually had plans to go again next month and for the first time ever, I was thinking of not going. She took down all my information and said that someone from management would be calling me back. She said that what happened was not supposed to happen and detailed what should have happened. She said that the CM should have given my dad a Guest Assistance Services Card that they would present at each ride and be given a return time. She said that they could return to the ride any time after that return time, it did not have to be that exact time, just after. She said that if that is not something that works for my daughter's disability to explain that to the CM at guest services at that time and they would work out something that would work for her needs. I explained that although this new system is not as accommodating as the old one, that at least that would have been better than putting her in a stroller or a wheel chair and having my dad try to navigate a double stroller though the lines that are not made for a stroller or a wheel chair. I told her that offering a stroller or a wheel chair is not a welcomed assistance, she spends hours in therapy every week trying to get stronger and balanced to ensure she won't need something like that. I also mentioned that my dad, who is a 68 year old grandfather, was there by himself, essentially as a single parent/grandparent with 2 young girls and that it showed just how hard the system is on single parents. Going back and forth to try to get fast passes at kiosks meant everyone trekking together. I specifically mentioned the problem they have with the fast pass kiosk for The Little Mermaid Ride all the way at Mickey's Philharmonic. She said that the CM should not have sent him to go get the fast pass, that they should have had someone bring it to him! Again, the posted accommodations and what "should" happen is not what actually is happening. I am thankful that they listened and she wrote everything down, even read it all back to me. I made a point of telling her that I was calling not only for my daughter, but for all of the other families that feel turned away by Disney. I mentioned that my own social media and message boards are filled with people saying they are not going back until they have a reassurance that it is fixed. I told her that we never saw any abuse of the previous system and that it seems like they let a few bad apples spoil the bunch at the expense of people young and old with special needs that needed that assistance in order to be able to enjoy the park. She said that they were working on it and that someone from management would be calling me back to make sure that our trip there next month was "a magical experience again". I will keep you all posted!
Wednesday, November 20, 2013
When he went up to the Disney Cast Member (CM) at City Hall, instead of greeting him she asks, "What's your issue with Disney?" He went on to explain to her that they were hoping to get assistance for his granddaughter and explained to the CM that she has Cerebral Palsy, doesn't have use of her right arm, she fatigues easily, and has balance issues. She kept repeatedly asking HIM what his handicap was and what services HE needed. He kept repeating back that it wasn't for him, it was his granddaughter and was pointing to her. The CM didn't even look at her or acknowledge the doctor notes and school notes he brought in. She was robotic, uncaring, condescending and bordering on rude. Finally Chianna had to pope up and said "It's me that needs assistance, not him!" He asked about the fast pass assistance to minimize their wait times so that they could see the park before Chianna got too tired out and they had to leave. She said they didn't have anything like that and offered a stroller or wheel chair at no charge.
He finally opted for the stroller, getting a double one so that she could fit in it. He said navigating the lines in any stroller or wheel chair is not easy because the lines were not made for that. It causes unnecessary and undue attention.
The fast pass kiosk for The Little Mermaid ride is all the way at Mickey's Philharmonic for some strange reason, so after walking all the way over to Little Mermaid, they were sent all the way back to Mickey's Philharmonic to get the fast pass.
The system they have does not help those who need assistance and certainly does not help single parents or grandparents there by themselves!
For the first time EVER, I am thinking of not going back to Disney World and the Disney Parks when we are in Orlando next month. And until they fix this broken system, they are going to continue to lose money and have families like us disappointed and upset!
Saturday, November 16, 2013
My 41 years of Disney Magic were erased today. The new Guest Assistance program for handicapped guests is no help or assistance at all. My dad is in the Magic Kingdom today with my daughter who has cerebral palsy. She has a somewhat mild version of C.P., meaning she is not wheel chair bound and does not have any cognitive issues. She has a right sided weakness, she doesn't have use of her right hand and she wears a brace on her right leg.
They went to City Hall to request the new guest assistance accommodations explaining that although she walks on her own, she can lose balance and fall and that she fatigues easily. Waiting in long lines would exacerbate her issues greatly and put her in danger of getting hurt. They had NO SPECIAL ACCOMMODATION with fast passes whatsoever!
The information Disney released had said that the new changes would mean they could get multiple fast passes and would be given times to return to rides. They did not have anything like that available. They told him they had to get a fast pass for each ride and gave a complimentary stroller to MY EIGHT YEAR OLD so that she could use it as a wheel chair. They gave her stroller as wheelchair access and told them they had to wait in line with the stroller with everyone else.
Sure, that will help her not get fatigued, but way to go in making her FEEL singled out and handicapped. She doesn't use a stroller or a wheelchair any other time. Previously, they always gave us an alternate entrance pass and we were able to see everything she wanted in Magic Kingdom before she tired out.
I told my dad to speak to a supervisor, but he does not want to spend their one day there waiting to talk to people since he will evidently have to wait in line too. We live in Florida and usually visit Disney World several times a year. I have gone to Disney World at least once a year for all 41 years of my life. In the last 4 years since we adopted our daughter, we have been thankful to be able to have the guest assistance card so that she could experience the same magic we felt growing up. We went to the parks in Orlando several times a year, every year and never saw any abuse of the previous system when we were using it, which leaves me wondering if the change was even necessary.
Regardless of whether the change was necessary or not, there has to be a better solution so that you could continue accommodating guests that need assistance. Until I have confirmation of better accommodations for my daughter, sorry, Mickey, we won’t be “seeing you real soon”.
Tuesday, March 5, 2013
Dear Help Me Howard,
Thursday, January 31, 2013
Chianna has taken to telling jokes, especially knock knock jokes. I think most kids go through this phase, where they repeat the same jokes over and over again. So Chianna learned this Knock Knock joke from her cousin DeDe:
Smell Mop Who?
I don't want to smell your poo! That's disgusting!
Chianna-ism #2 came today. She was home from school and making observations. She said she learns a lot at school and when she is home, she still learns a lot because of "Daddy's Joke School". "I learn a lot of jokes and how to be funny from daddy!"
Signet Diagnostic Imaging billed his health insurance, which is United Health. United Health paid Signet whatever their contracted rate amount was very quickly in July or August of last year. Our patient responsibility is a $100 co pay. However, instead of getting billed for $100, in August, we began receiving invoices for over $1200. There was a message on the invoice saying that Myke's insurance term had ended June 30, 2012. I called United Health to find out that this was because the premium was not paid. Since I had paid the premium on time and was cashed well ahead of the due date, I then had to contact ADP since they are the ones we were making the COBRA payment to. They had incorrectly applied his insurance premium payment to the wrong account. They quickly fixed the error and contacted United Health, who reinstated his insurance status retroactively to reflect that he was fully insured at the time of service in July.
I called Signet's billing department to tell them that all they had to do was re-submit the bill to United Health and they would get paid. The guy on the other end of the line told me that they could not re-submit it. After much arguing back and forth, he finally told me that they were paid by United Health, however after receiving the payment, they received a letter from United Health saying that the claim was paid in error and Signet needed to send United Health the payment back. So I called United Health to tell them that Signet was requesting a letter stating that they could keep the payment. United Health then tells me that they do not write a letter, but that I should tell Signet that they can keep the money and that they would send out an Explanation of Benefits document to them and that would let them know that they could keep the money. Unfortunately, that was not good enough for Signet's billing department in India, so after dealing with Signet's rude and unprofessional billing department insisting that I had to pay the full $1200+ and cutting me off, not letting me speak, I asked to speak to a supervisor. Of course, there is no supervisor available, so one was supposed to call me back. Several days later, I received a call from the supervisor, who was just as rude and unprofessional, telling me that we were responsible for the entire $1200+ bill.
I then called United Health back and spoke to someone else who gave me the same B.S. about they don't send a letter out. I explained that I thought that was the only thing that would fix our problem, and I asked to speak to a supervisor there. The supervisor at United Health told me the same thing. I don't understand what aversion they have to writing a damn letter, but they sent out another EOB to Signet's billing department.
That was at the end of November 2012, and I had thought that worked since I didn't hear from Signet Diagnostic Imaging Services since then - until two days ago, when I got a call from a collections company, expecting immediate payment of $1200+!!! Now this is about to affect Myke's credit - and it has already been paid, and we are only supposed to be responsible for $100 - which I am not paying until I get confirmation that the billing problem is resolved - which I do not think we should even owe anymore since they put me through such stress and aggravation and wasted hours and hours of my time.
I called United Health again, and this time I spoke with someone there who confirmed, once again, that they don't send a letter, but she offered to call Signet's billing department for me to tell them that they can keep the payment and that our responsibility was only $100, and that they need to recall the bill from collections.
I called the collections company back to let them know this, however of course, they only care about getting the bill paid, regardless of whether it is valid or not, so only wanted me to pay them, didn't even want a fax of the EOB to show that United Health showed that the claim was paid.
Are you frustrated yet? I sure am!!!
A few hours later, I got a call back from the rep at United Health, who was exasperated. She said she totally understood what I meant about Signet's billing department in India. She said they didn't have a clue what was going on. And on top of that, now another problem arose. The Signet Diagnostic Imaging Services incompetent billing department told her that they WANTED to send the payment back because it was "not enough" and who was going to pay the rest of the bill since United Health only paid $200+ whatever dollars - the total for their contracted rate. She said she futilely tried to explain to him that the contracted rate was what they get paid and the patient responsibility was only $100. Since he would not give up trying to get paid the full $1200+ amount, she told me that she now has to turn it over to the division that handles contract rate disputes and they have to get involved and contact Signet to attempt to resolve the issue.
In the mean time, she is sending me out a new EOB statement that I now have to send along with w written dispute letter to the collection agency. More time wasted!
So why am I taking more time to write a blog post about all this? I hope to get the word out that if you need an MRI, Cat Scan, CT Scan, Pet Scan or any other diagnostic imaging services, do NOT go to Signet Diagnostic Imaging Services of South Florida unless you want a billing nightmare of your own!
Tuesday, January 1, 2013
Candied Pecan Rice Pudding made in the Slow Cooker:
3/4 cup long-grain white rice
3 cups milk
3/4 cup granulated sugar
3/4 teaspoon ground cinnamon
Nutmeg to taste
Ginger to taste
1/3 cup ground candied pecans
1 pinch salt
1/3 cup butter, melted
- In a colander, rinse rice thoroughly under cold water.
- Put in lightly greased slow cooker.
- Add remaining ingredients, except for butter & whipped cream.
- Stir to combine.
- Pour butter over rice mixture.
- Cover and cook on HIGH for 2 to 2 1/2, until rice has absorbed the liquid.
- When ready to serve, spoon into dessert bowls and top with whipped cream.
Wednesday, August 8, 2012
Anyhow, Chianna had a therapy appointment today at 4:30. I was working up until the last minute, when I realized that her shoes weren't on and her hair was a tangled mess. So off I run to put her shoes on and comb our her tangles as quickly as possible without hurting her or pulling all her beautiful hair out! Then rush to the car, and rush to the therapy office, which is about a 15 - 20 minute drive. Rush in, to find that for the 2nd time in two weeks, her scheduled therapy appointment will not be happening because the insurance approval from Staywell hasn't come through yet! It has been 2 weeks! So I am upset with the therapy place because someone who was supposed to call me didn't; nor did they return my message yesterday when I called them to confirm the appointment either! At least, the occupational therapist that was there at the front desk offered to do some quick stretches with Chianna and showed me some new ways to stretch her that I really like a lot, so it was not a total waste, and I am so thankful for that!
So, I march off super, uber pissed off, doing my best not to take anything out on Chianna or let her even know I was mad because she doesn't understand these things and it will only confuse her. How do you hide this level of frustration? I do not know, I think I have perfected the smile through gritted teeth.
I get in the car and call my Staywell / Wellcare Case Manger, you know, the one that was none too helpful the first time around. But I figure, its better than some dimwit in 'customer service' [term used lightly] who will not likely even give me the correct information at all. And actually by dimwit in customer service, I don't mean any ill will or negativity towards any individual, they are only as good as the structure and policy around them, and when that makes it impossible to do their job properly, its hard to assume they should be caring and knowledgeable. Luckily, our case manager was on another call and the person who answered the phone in that department asked if he could help me. His voice alone was pleasant and comforting, so I thought I'd give it a shot. I guess, I have to look at it as what might be the silver lining in the situation - at least I hope it turns out well. He seemed like a big help to me. He is assigning me a new case manager, one who deals with long term therapy. (Yes, you can ask why didn't they do that in the first place? And also say "DUH" - loudly and obnoxiously, too.) He said that didn't make sense at all that they take so long to approve more therapy sessions when she needs constant care. I also explained to him the therapy problem I was having and that the previous case manager didn't really resolve any situation for me, because the place that she found for therapy is 45 minutes away and didn't have therapy available on the same days, but that even if they did that a 45 minute drive each way after school is too hard on Chianna both mentally and physically, and doesn't allow time for her school work, dinner, bath and bedtime. He agreed with me, and sounded much more empathetic and compassionate and understanding of my situation than the case manager they had assigned me did. She was just a strictly "by the book" type of thing and I was definitely upset about the lack of help. Hopefully this person I spoke with wasn't just a "yes man", because I've spoken with plenty of those type people at insurance companies before. And more importantly, hopefully the new case manager, or case nurse we are assigned can REALLY HELP us, not just give me lip service and quote their guidelines. Maybe they might be able to get her out of network therapy covered after all, maybe even they can get her orthotics covered out of network too, but if none of that happens, then hopefully at least we can get a steady stream of approvals so that when I finally get appointments for her to see her speech and occupational therapists, that we can keep them! It shouldn't be too much to ask!
I should be getting a call from a new case manager within the next few days, so as usual, I will try to keep the blog updated with the situation!
On Friday we left for Orlando to visit the family and to attend the burial of our Nonie and Papa. It was not a fun trip, but we now have some closure and know that Nonie and Papa Nick are together forever and that is a comfort. At least we got to spend time with the family and Chianna and I got to meet some of Myke's cousins that we had not met before.
We stayed at a hotel near Baba and Pa's house and on Saturday and Sunday we immediately saw some improvement in the range of motion on Chianna's right arm, she was able to push the elevator buttons with her right hand much quicker, easily and more accurate than before. When we noticed that, Myke asked her to give him five and noticed the increased speed, and strength that she was able to hit his hand with her right arm. Once she realized this, she was wacking everyone five whether they were prepared for it or not! I guess this is the only time that hitting and smacking will be allowed in our family! Chianna is very proud and excited and was eager to tell anyone and everyone she saw this weekend about her "ordeal" in the hospital. She wisely explained to friends, family and even some strangers that she had shots in her arm to help her muscles get stronger and that is why her arm is so strong and fast now!
On Sunday, she started complaining that her ankle hurt. She spent Sunday and Monday complaining it hurt and limping or hopping around. I called the doctor's office Monday afternoon and again today when I didn't hear back. Yesterday at camp, she said she didn't want to do anything since it hurt so much. Today she stayed home from camp (not because of the ankle, but because the field trip was ice skating and she wasn't going to be able to handle that.) This morning she said it still hurt.While waiting for the doctor's office to call back, I called the physical therapist, and he offered to come by today to look at her ankle and see if it is anything serious. Just like the broken car that doesn't act up when you take it to the mechanic, he arrived this afternoon and she was perfectly fine! But, at least he was able to confirm that it was nothing serious and likely just a side effect of her using her muscles differently and possibly causing some stress on her ankle joint because of it that will take some getting used to. He did some stretching with her and observed that her ankle flex had gained a few degrees in flexibility since he saw her just on Friday and of course observed the fast and hard "fives" that she is giving everyone these days. He seemed quite happy with the progress.
When I spoke with her doctor, after she called me back, she said that she really needs to be wearing her AFO and SMO braces for support. Unfortunately, her braces are not ready yet, which seems to be another side effect of our lacking health insurance situation, the prosthetic places that are covered don't put our the best product. We had her braces made quite a few months ago, I think it was in March or April that she was initially measured for the braces. They arrived the middle of June during the last week of school. It took a really long time to get them, the first day I sent her to school in them, she came home limping and could barely walk, her feet and ankles were all red and scraped in many places because the braces were not molded and fitting her properly. I took them back 3 times before seeing the doctor last month who wrote a specific set of instructions to the orthotist on a prescription and said if these changes can't be done, remake the brace. So about 2 or 3 weeks ago we went back to the orthotics place and they ended up re-casting a mold of her right foot and ankle to make a new brace. She made the follow up appointment to pick them up for yesterday, saying they would definitely be ready by then when I questioned her about it, and said she was having it expedited. Well yesterday morning, I received a phone call that they were not in, in fact, they were just finished and had to be shipped from Washington state and won't be in until next week! Some expedited service that is! I am lucky that I don't have a job where I would have had to have taken off work for the day or afternoon since I didn't even have any notice that it wasn't in. So, the point being that the doctor is upset that she doesn't have her braces yet, because that ankle brace is very important to keep the stress off of her ankle.
Her physical therapist showed us what the AFO and SMO should look like, as made by an orthotist that he recommends, and the look of them are like night and day. There are a number of things wrong with the design aspects of Chianna's current brace compared to the one that is made better.
So, we will see what happens with the AFO/SMO situation and the Botox too.
Chianna had Botox injections done last week to treat her Cerebral Palsy. I am going to do my best to keep updating the blog on her continual progress with the treatment. One of the issues we have is that after the Botox injections are done, they only last about 3 - 4 months, so we need to capitalize on the time frame and get her 3 sessions of both physical and occupational therapy per week.
Saying that is going to be challenging is an understatement!
The procedure for the Botox went very well. It is done under IV sedation with an ultrasound guidance to make sure the right muscles are targeted. The purpose of the Botox is to resolve the issue of tightened muscle tone that affects Chianna's right arm and right leg. She cannot flex her right foot, she cannot bend her right wrist, or turn her palm to face up; plus, her right arm is usually bent and her fist held up. The Botox targets the muscles that are tight and stronger because of these movements and the Botox in a way "paralyzes" the stronger muscles so that the weaker muscles can be worked out to get stronger so that they have a fighting chance to balance everything out once the effect of the Botox wear off. I hope I did a good job explaining that!
We arrived at Joe DiMaggio's Children's hospital in Hollywood last Thursday morning and I cannot say enough nice things about the facility and the staff there. They really catered to Chianna and made her feel welcome, special, and cared for. Even the person that called in advance to tell us what time to be there made sure to tell us that she could bring a toy, stuffed animal, or something from home to keep her company. She opted to bring her special Fox named Happy. I am sure she will not have any scary hospital memories or thoughts based on this place. We arrived to waiting room with a large screen tv playing cartoons. Everyone there from the check in to the nurses and doctors were so nice. When we went into the outpatient area to her bed, she was given the remote to her own tv and each nurse in the area came over and introduced themselves. Shortly after that a patient liaison came over and sat with her for quite a while. Soon Nutmeg, the resident dog arrived and came over too for some petting and loving. The nurses put a numbing cream on the spots where they might need to put the IV so that it wouldn't hurt and while they were putting the IV in, the liaison blocked Chianna's view of the IV set up with her IPad, and they played some games. Chianna didn't even know the IV went in. After that, while we waited for the procedure time, they gave Chianna sun catchers to paint and take home with her. We were able to go into the procedure room with Chianna and stay with her until she fell asleep. That was the only hard part, the IV meds sting when they go in for about 10 - 15 seconds until she is put under and she cried, she has such a high tolerance for pain, that she very rarely has ever cried when hurt, so it must have really hurt. The 10 - 15 seconds was horribly long for Myke and I and I am quite sure it hurt us more than it hurt her. The whole procedure was only 15 - 20 minutes. The doctor sent Myke and I to get coffee, and by the time we did that and came back they were all finished and we were able to sit with Chianna until she woke up, which was only about 15 or 20 minutes later.
The doctor spoke with us and said that everything went fine and that the effects will take about 24 - 48 hours and the optimum effects are in about 3 - 4 weeks. She went over stretching exercises for us to do with her daily and after an hour in recovery, we were on our way home!
I will do my best to keep posting about the results that we see with Chianna's progress!
We were assigned a case manager from Staywell who informed me that if any therapy is available within 60 minutes driving time (each way) that the insurance company has fulfilled their obligation and will not allow any out of network coverage. And the therapy providers don't have to have therapy available on the same day.
So evidently, we are supposed to be able to take multiple days off of work to drive her round trip up to 2 hours to a therapy provider. I explained that not only is that not feasible to take off work, but that Chianna cannot handle the long drives and the time spent for that plus therapy takes away from our family time, not to mention that once school starts, she has homework to do each night and getting home from therapies [exhausted] at 6pm or later and then attempting to do up to an hours worth of homework, eat dinner, have a bath and be in bed by 8pm is rather impossible.
The case manager was very uncaring to any of those facts and just stuck to the facts that are listed in our policy, standing by her company rather than even looking into helping us in any way.
So, Chianna started with a physical therapist who comes to the house. We started about 2 or 3 weeks ago now, and he is absolutely wonderful. I am so glad that I feel it is worth every out of pocket penny we are paying him. The fact that I don't have to run around and rush to drive to get her somewhere in time is such a relief and he even comes on weekends!
Chianna really likes him and so far, we are off to a great start with that, despite having to pay in full.
I am still trying to coordinate getting Chianna the OT and Speech therapies twice a week, and it is yet to happen, but hopefully once school starts, we might be able to get a schedule together.
Friday, June 29, 2012
Currently I believe what is happening is that the medical review division of Staywell that communicates with doctors, and only doctors (not members) has different information and does not communicate with the customer service division that I am only allowed to talk to.
The referral lady at our pediatrician's office gave me the phone number of the person she deals with in the medical review division. I called this nurse named Sandy. I first left a message explaining who I was and to please call me back because I am getting conflicting information. I didn't hear back, so I figured I'd call again since I really don't want to stew over this all weekend. I wish I had recorded the conversation with this woman, who has got to be one of the bitterest, evil human beings I have ever spoke to. Yes, you read that right. On top of everything I am dealing with, this woman decides to be a bitch. And I don't use that lightly, I wish I had recorded the spiteful tone coming out of this "woman's" mouth. And she is a 'nurse'? Pitiful.
Here is a summary of how the conversation went:
Me: Hi, is this Sandy? My name is Shari McConahay
Sandy: I got your message earlier but I didn't have time to call you back.
Me: I'm sorry to call again, but I am anxious to get this situation resolved.
Sandy: (cutting me off) Well, your daughter has already had A LOT of therapy.
Me: Ummm, no, she hasn't had a lot of therapy. That's why I'm calling.
Sandy: She gets Speech and OT.
Me: No, she gets speech, but not OT or PT.
Sandy: Well then we are both misinformed because ATA says she is getting speech and OT.
Me: Who is ATA?
Sandy: The American Therapy Association, that is where you get your therapy from.
Me: No, we get therapy at All Aboard Therapy
Sandy: ATA is the one who approves it, we don't even do that here.
Me: And the referral dept at her pediatricians office said you said she only gets 24 speech sessions?
Sandy: Yes, and she's used them up, she doesn't get anymore.
Me: She is getting speech, but she hasn't has 24 sessions, so I don't even know why I am being told she has reached any limit.
Sandy: Well then good for you, she still has sessions left!
[Yeah, good for me, Lady!]
Me: I don't understand, why did the supervisor I spoke with at Staywell this afternoon (I provided name and reference #) tell me we get 24 session every 60 days and then it renews every 60 days? I confirmed that it does not run out.
Sandy: We aren't Staywell, we are Wellcare and she only gets 24 sessions it is not continuous coverage forever as long as you want.
(I still am not clear the difference between Staywell and Wellcare, but when I login to our account online, from Staywell, it changes to Wellcare. Her insurance card says Staywell Kids.)
Me: OK, well I am getting 2 different stories and it is not fair that I am stuck in the middle.
Sandy: Well I know what I know and that is you only get 24 sessions. I can't talk to you anymore because I am the only nurse here, and I have other phone calls to answer that are coming in right now.
Me: Well, I am having an emergency here and I need help. How do I find out about getting my daughter approved for out of network coverage for the occupational and physical therapies?
Sandy: We don't approve out of network coverage, that never happens. And there are providers in your area. I told the doctors office to write a prescription for physical therapy.
Me: There are not providers in my area, I actually sent in a letter detailing each of the providers that are listed on the website and the reason that they cannot see my daughter.
Sandy: (Cutting me off before finishing the sentence.) Yeah, I read that, but there are providers.
Me: Can I speak to a supervisor?
Sandy transferred me to a manager's voice mail. I left a message and I hope I can talk to the manager on Monday. I also hope she takes my complaint about Sandy and what an awful person she was to deal with.
I can not tell you the horrid, evil tone this woman had! And I feel I have to add, I was not rude to her at all, she must be upset with something that she deems it necessary to take out on others but she is clearly in the wrong profession.
I then called back the Staywell customer service division that I spoke to and ended up getting no where. They reassured me that "they know for sure" that she gets continual therapy, 24 session every 60 days and that I have to have the doctor's office call back on Monday to request a new authorization to go out of network. They assured me that they do approve out of network providers when it is necessary. It's like I'm talking to two different companies here - and they even call themselves by different names. The company is state run, and it is really messed up. They did tell me that I could have the doctor's office call them instead of the provider line. But I have a feeling that won't go well. We will see what happens on Monday.
In the mean time, I called the UCP and Easter Seals to inquire about advocates. I am calling our local news stations to tell my story. I have already wrote all my politicians, I'm doing that again. I am filing a complaint with the state board for health insurance too. Any other ideas, please let me know.
I don't know how long this is going to take to get my daughter the therapy she needs. It has already been 8 months since she has had the therapies recommended by her doctors. If coverage does run out, or I cannot get the correct therapies for her, the price to pay for them out of pocket is over $1,100 a month. I am going to look at fundraising money so that we can get her the therapy she needs.
Here is Part 1 of This Insurance Problem
Part 2 of My Insurance Problem
Part 3 of My Insurance Problem
Please share my story.
My Next Post on This Topic is:
To digress, my daughter has Cerebral Palsy and needs speech, physical and occupational therapies to give her a chance at a better life, to help her learn to use the weakened right side of her body. The longer she goes without therapy, the more her muscles stiffen and the less help the therapy is. Although C.P. is not progressive, without the necessary therapy, she gets worse.
Staywell does not have enough providers in our area for therapy. Since the doctor's office submitted all the information Staywell requested on June 14, 2012, I have called Staywell several times to check on the status. My last call to them was on Wed. June 27th. First they told me that the Dr. had to call again because they are missing information. I asked what information is missing and she tried to tell me the doctor's office had to call. I explained that they are making it impossible for my daughter to receive the therapy she needs because the doctor's office cannot continue to call spending hours on the phone. She put me on hold, came back and said she was sorry, she saw the doctor's office did send in the necessary info and that the case was in review. She said it should only be a few more days since it takes about 14 days.
So I called today to check the status. First I was told there is no record of any request. After I told her there had to be since I have called about it several times, she found it, and tells me that they need more information and for the doctor's office to call. I freak out and ask to speak to a supervisor. She tried not to get me a supervisor, but did after I threatened to show up at the office with attorneys.
Now I am speaking with the supervisor, and they are telling me that the medical review division closed out the case on June 20th with the reason "no authorization was necessary". She is telling me that the doctor's office needs to call back because that department doesn't speak to members, only doctors. That the information on the original request didn't say the request was for an out of network specialist. WHAT!!! It definitely did and my letters to them and the doctors information did as well. They purposely give people the run around so that they will give up because no one can spend the time on the phone and on hold and calling the doctors offices, insisting that they help me.
She told me that the only thing to do is have the doctor's office call back and submit a new request, make sure it says out of network coverage and ask for expedited, it will take only 3 days.
We will see. To be continued. . . . .
Next posts on this topic:
Wednesday, May 23, 2012
When we made the decision to adopt a special needs child, I did all the research on the health insurance and put everything in place to make sure that Chianna would receive health insurance coverage under my HMO policy through work just as the law states - adopted children are entitled to all the same coverage as biological children. Little did I know at that time that biological or adopted, health insurance doesn't cover all of the necessary therapy that any child with Cerebral Palsy needs.
So after we completed our adoption, Chianna was under the HMO I had with AETNA and the monthly premiums just for her were over $400/month. AETNA representatives on the phone straight up lied to me in their well known policy to "make the customer shut up and get off the phone". They said that after the first 60 days of therapy that they do cover all I would need was a doctor's letter stating that she would need to continue with therapy and that she would be approved for more therapy. Under the insurance policy, they also don't really cover the therapy sessions since the co-pay they charge is the same rate as a non-insured patient can receive - $50 per thirty minute session. Chianna was recommended to have two 30 minute sessions per week for speech therapy, occupational therapy, and physical therapy. I'm not sure who can afford $300 per week in co-pays, but it sure ain't us. Especially when paying over $100 per week already in her health insurance premiums. However, the reps at AETNA also told me that our policy had a $1,000 per year out of pocket maximum so that once we reached that total in co-pays, her therapy would be covered at 100%. So, we made the decision to invest the $1,000 to meet the out of pocket minimum, putting it on credit cards that were already almost maxed from our trip to Vietnam and all the other adoption expenses. Not only did AETNA neglect to make it clear that the out of pocket maximum was within the annual year, not a fiscal year from the date started (we were already in August at the time), they told me that she would be eligible for more therapy once the initial 60 days that they cover (but don't really cover because of the high co-pay) was over knowing the whole time that they DON'T EVEN COVER ANY THERAPY AT ALL FOR CHRONIC CONDITIONS, like Cerebral Palsy. What!? They don't cover therapy at all for something like Cerebral Palsy? Anyone else see something wrong with this picture? Not to go off on another tangent here, but for those who don't know, Cerebral Palsy is not a progressive disease - symptoms can actually improve over time with therapy, surgery in some cases, and other treatments too. Chianna has a right sided weakness from the C.P. and it mostly affects her balance and she has very little use of her right arm and hand. The therapy she is needs can help her become more independent by gaining a large amount of mobility in her right arm and hand and becoming more stable to prevent tripping and falling. I have seen first hand how much the therapy she has received to date has helped with this, allowing her to start to use her right hand as what is called a 'helper hand'. Her speech is also affected by muscle weakness, and thus the need for speech therapy too.
So after a long battle with AETNA over the coverage, the lies and spending countless hours trying to get simple errors on their part corrected, appeals, supervisors and almost $3000 in co-pays in 7 months, I finally found out that since they don't cover chronic conditions at all that Chianna would be eligible for the State of Florida insurance program for kids called Healthy Kids.I switched her to Healthy Kids and removed her from my HMO, and her monthly premium was reduced from over $400 per month to $135 per month AND her therapies were covered at $5 co-pay per thirty minute session. Why doesn't anyone tell you this? I have no idea and would do anything to get back the hours on the phone, writing letters, crying, pulling my hair out and going gray with the little hair I had left.
Once we were moved over to Healthy Kids, I called them and explained that my daughter had Cerebral Palsy and needed multiple therapy sessions per week and doctor visits, braces for her ankle and foot, etc. etc. The rep took my information and moved us over to a branch within Florida Healthy Kids called Children's Medical Services or CMS. Under CMS, the premium was only $15 per month and there were no co-pay fees at all! Plus we were able to get all the therapy the doctors recommended for Chianna. This gave us a big break in the costs since we had already spent so much and needed to recover. We did spend a lot of time taking her to therapy sessions and either Myke or myself always sat in on every session so that we could continue to practice and reinforce what was taught in therapy. The therapy place we were set up with and I was hesitant to leave was a full 30 - 45 minute drive from our house we made twice a week and the each time this was about a 3 hour process, so the goal of getting Chianna therapy was definitely achieved, but it definitely took up a lot of time; time we gladly gave up for her therapy though and so happy and thankful to be getting it. She was also receiving horse therapy once a week on Saturdays, which was amazing for her and definitely helped with her balance and core strength.
To give you an idea of the timeline, we dealt with AETNA from June 2009 - February 2010 when we switched to Healthy Kids CMS and had CMS up until October 2011. At that point I realized what else was wrong with the state insurance program. So here is where I get even a little more personal and reveal some normally private information. I normally would not share this and have debated for several months blogging about this at all, but I feel my story needs to be told - that MANY families stories need to be told and for the sake of hoping that someone who reads this will be able to make a change in the US health care system, which is definitely very, VERY broken. During 2010 and part of 2011 Myke and I were not making very much money from our family business, taking pay cuts to try to help it along. When we started a new business in 2011 and were able to take a higher salary, Healthy Kids moved us off of CMS and back to a different plan called Staywell under the Healthy Kids. It turns out that all the therapy Chianna was getting under CMS was based on being financially needy, not medically needy. A family of three cannot make more than $3,180 per month in order to qualify for CMS. First of all, that is a really low amount of money to be making, and second of all, why is this coverage based on financial need instead of medical need? Clearly a family that makes even $3500 or $4000 a month can't be expected to also incur the expenses of therapy co-pays, right? So the Staywell Healthy Kids plan we were switched to is the one with a monthly premium of $135/month and co-pays of $5. Still a very fair price to pay. However, this plan is only accepted by very few therapists and in fact, she has not had physical or occupational therapy since October 2011 because I have not been able to find therapists under this plan that accept the insurance, or even see children - the insurance is called Healthy KIDS! We finally just got speech therapy started about 2 months ago, and that is going great - it is with a speech therapist we love and saw when Chianna first came home and she is making tremendous progress. But (of course there is a BUT) that progress is hindered because the insurance only covers 9 sessions at a time. Chianna gets 2 thirty minute sessions per week. The insurance does not allow the therapist to request more therapy sessions until after the 9th session is completed. So our therapist put in the request the same day as our 9th session and then they took over 3 weeks to approve new sessions, so instead of her getting continual therapy like is recommended and prescribed for a patient with Cerebral Palsy, she it is basically looking like 4.5 weeks on and 3.5 weeks off. Consistency is really important with therapy so that regression doesn't happen, but that doesn't matter to the insurance companies. I guess I should be happy that we are able to get her any therapy at all, but when it comes to my baby, I want the best for her, I want her to be able to overcome as much of this handicap as possible and with children that have C.P., time is ticking, the older they get, and the more they grow, the harder it is for the therapy to be effective. Next time we have to get approval for 9 more speech sessions, I will be calling the insurance company to find out if there is anything we can do to make the approval process any quicker, but in the mean time, I have another issue I am dealing with.
I called the insurance company last month and explained to them that I have spent several hours a week for the last 6 months making phone calls going through their list of providers for physical and occupational therapy, leaving messages, waiting for return calls, pushing buttons on automated phone systems, etc. and none of them are seeing new patients or have openings, and half on their list don't even see children at all. They told me that if I get a letter from Chianna's pediatrician stating that her therapy is medically necessary and that since nothing is available in network, request to go out of network. I wish I would have known this months ago! So, that is where I am at now, I called her pediatrician's office and have now been going back and forth with them for over 2 weeks, because instead of just writing me the letter, they started to try to find therapists in network. I don't know if they feel they need to qualify that part of the statement in the letter or what, but I keep explaining that I don't need them to find therapists for me, that I just need a letter because once they submit the letter to Staywell insurance, it will likely be 2 - 3 weeks before they answer as to whether they will approve the request. Just to be clear, I love her pediatrician and the office, this is not a complaint against them, its just adding to the time consumption and frustrations and ultimately the delay in getting my girl the therapy she needs. If would have known that they would call all the therapy places on the list for me, it would have saved me hours of time and 6 months!
So now that I have let the cat out of the bag, I will try to keep the blog up with updates on our insurance situation. I know that we are not the only family facing this problem and I hope that if I speak out, it might help others as well as start to mend a broken healthcare system.
Next challenge after this one is seeing if Chianna qualifies under the insurance to receive Botox, which her physiatrist is recommending. More on that in another post. . . .
Until next time, wish me luck, patience and sanity!
My next posts on this topic:
Wednesday, April 18, 2012
Tuesday, February 14, 2012
Chianna loves her Uncle Brian!
May the Force be With You this Valentine's Day! Chianna hand picked this one!
Chianna created this one!
Papa & Chianna definitely go together like Peanut Butter & Jelly!
De De & Chianna: cousins and friends forever!
Monday, February 13, 2012
Wednesday, February 8, 2012
Saturday, February 4, 2012
Thursday, January 19, 2012
So here is the latest Chianaism from Chianna.
Google launched a petition. Wikipedia voted to shut itself off. Senators' websites went down just from the sheer surge of voters trying to write them. NYC and SF geeks had protests that packed city blocks.
You made history today: nothing like this has ever happened before. Tech companies and users teamed up. Tens of millions of people who make the internet what it is joined together to defend their freedoms. The free network defended itself. Whatever you call it, the bottom line is clear: from today forward, it will be much harder to mess up the internet.
The really crazy part? We might even win.
P.S. Show this video to as many people as you can. It works! http://fightforthefuture.org/
Approaching Monday's crucial Senate vote there are now 35 Senators publicly opposing PIPA. Last week there were 5. And it just takes just 41 solid "no" votes to permanently stall PIPA (and SOPA) in the Senate. What seemed like miles away a few weeks ago is now within reach.
But don't trust predictions. The forces behind SOPA & PIPA (mostly movie companies) can make small changes to these bills until they know they have the votes to pass. Members of Congress know SOPA & PIPA are unpopular, but they don't understand why--so they're easily duped by superficial changes. The Senate returns next week, and the next few days are critical. Here are two things to think about:
1. Plan on calling your Senator every day next week. Pick up the phone each morning and call your Senators' offices, until they vote "no" on cloture. If your site participated today, consider running a "Call the Senate" link all next week.
2. Tomorrow, drop in at your Senators' district offices. We don't have a cool map widget to show you the offices nearest you (we're too exhausted! any takers?). So do it the old fashioned way: use Google, or the phonebook to find the address, and just walk in, say you oppose PIPA, and urge the Senator to vote "no" on cloture. These drop-in visits make our spectacular online protests more tangible and credible.
That's it for now. Be proud and stay on it!"
Wednesday, January 18, 2012
Monday, January 16, 2012
1. He'd dead.
2. It's a sad story.
3. He was good.
4. He was shot in the head by a bad man. (YIKES!)
5. There is a statue of him that she wants to see. (likely because she probably thinks it shows what happens when you get shot in the head?)
Anyone else think that "shot in the head" is a bit graphic for 1st grade? I didn't really probe any further to find out who told her that, I just figured I'd stop the conversation there before it got any worse with more questions that I can't or don't want to answer to a 6 year old.